Cam - Sorry you're not please with the results. I'd probably be heading for a consult with another plastic surgeon.

Generally I'm not litigious. The more time goes on, the more things doctors discover. If you're suing because there's now a new finding about your diagnosis that wasn't available at the time - doesn't make sense to me.

kam, I'm so sorry that you've had such difficulty with your surgery and now believe, based on new information about the NBN mutation, that the surgery was unnecessary.

As others have mentioned, genetic mutation information is always subject to change, as more people are tested and more information comes in. While it is unusual for positive mutations to be reclassified, it can happen, particularly for lower risk mutations, which is how a mutation that confers 30% increase in risk would be classified.

Was it strongly recommended to you by a genetic counsellor or was it written on the lab report that you should consider/have a BMX? I don't know that you would have a successful lawsuit, but the 'official' recommendation for those with the NBN mutation, even when it was thought to increase risk by 30% (taking 'average' risk of 12.4% up to 16.1% for those with this mutation) was enhanced screening. If the recommendation you received was different from this - if it was suggested to you in writing that you should consider or have a BMX - you might have something there.

Here is the full NEJM article that references this change in the NBN gene:

A Population-Based Study of Genes Previously Implicated in Breast Cancer https://www.nejm.org/doi/full/10.1056/nejmoa2005936

Following is their conclusion on how this change affects patients: "In particular, the finding that the NBNc.657_661del5 Slavic founder mutation was not associated with an increased risk of breast cancer suggests that the recommendation by management guidelines to increase screening among women with NBN pathogenic variants may need to be reevaluated."

And here are the NCCN Guidelines on the NBN gene, from prior to this change:

Have you resolved your issues with your reconstruction, either through the first plastic surgeon or with a different plastic surgeon? You can't change the fact that you had the BMX, but I hope that you can get to the point of being satisfied with the reconstruction. And not that this will necessarily make you feel any better, but even without considering the NBN gene, the fact that you've had breast cancer one time means that your risk to be diagnosed again, with a new primary breast cancer, is about double that of the average woman. This is true for all of us who've been diagnosed. For many women, that is reason enough to have a BMX. I didn't - I had a single mastectomy at the time of my first diagnosis - and I was diagnosed again, and I don't have any position genetic mutations that increase breast cancer risk.

It sounds like you have made up your mind and that the many responses given here haven't made a difference.

kam, yes, you already had cancer. With what you knew at the time of your diagnosis, maybe the NBN mutation caused that, or maybe it didn't. You had to treat that cancer, but the decision to have a BMX wasn't related to the cancer you already had (as you said, a lumpectomy would have sufficed), but was based on your risk level to develop a second breast cancer. The contralateral mastectomy was a prophylactic risk reducing surgery. What the guidelines say is that based on the NBN mutation alone (back when it was thought to increase risk by 30%), there was insufficient evidence to recommend risk-reduction surgery, which is what your BMX was. Of course there are many other reasons to have a BMX; just having the diagnosis of breast cancer, and the associated higher future risk, is one reason. So I am not at all questioning your decision but am explaining how this would be looked at if you were to pursue a lawsuit. Unless the genetic counsellor or the lab clearly and directly told you to have a BMX because of this mutation alone, your decision to have the BMX will considered to be personal choice based on a variety of factors.

What did your genetic counsellor tell you about this gene and the relative breast cancer risk? What did he or she recommend? My counsellor clearly told me that the data on genetic mutations changes all the time, and when I tested negative, she encouraged me to come back again in 5 years to be tested again. The information changes all the time for all genes; it's not that further research was being done specifically on the NBN gene, it's that research is being done constantly on all genetic mutations. This is a very new area of science.

And yes, this does happen with BRCA genes. I read an article a few months ago about a large family of women who all thought that they were BRCA positive, and many had PBMX surgeries, but the particular mutation that runs in that family was reclassified as being negative. Similarly, last month I read that Chris Evert was diagnosed with ovarian cancer. The cancer was found when she was having what she thought was prophylactic surgery to remove her ovaries and fallopian tubes. Her sister had died from ovarian cancer a number of years ago and at the time of her diagnosis, had tested negative for all known BRCA mutations, although she did have a BRCA mutation that was thought to not be cancer causing. It turns out that 5 years later, this mutation was reclassified as being BRCA+. That prompted Chris to have BRCA testing and she found that she carries the same gene. She therefore decided to have the prophylactic surgery (which turned out not to be prophylactic).

It's awful to be surprised by something like this, but it's an evolving area of science where things really do change every day.

Edited to add: Just to clarify an earlier point, for all of us, having been diagnosed with breast cancer before, our risk to be diagnosed again is approximately double the risk of someone who has never had breast cancer before. Double the risk is a 100% increase - much more than the risk increase that had been associated with the NBN gene. So if the 30% risk increase drove you to have the BMX, you should be glad about that, knowing that your risk was in fact higher than you thought.